It’s the night before Thanksgiving, and I have a lot to be thankful for. Most of all, I feel gratitude for finding myself in a healthy place – both mentally and physically. After seven years of struggling with chronic invisible illness, this is no longer something I take for granted.

The illnesses in question: fibroids and Premenstrual Dysphoric Disorder (PMDD). 

I was diagnosed with fibroids in 2016, just one month before making a big move across the country. They quickly progressed from minor inconvenience to serious health issue. Over the years, I was put on several hormone-based treatments for fibroids (IUD, Depo Provera, and progestin), but the medications changed my personality and interpersonal style. Even my friends and family noticed. I was losing the equivalent of two blood transfusions each month. I absolutely needed those meds, but I wish someone had warned me that they could make me combative and irritable. 

Around the same time that I first ended up in the ER from hemorrhage, I had my car stolen, my computer network hacked, and a break-in to my apartment. The events were deeply unsettling, and I was concerned that someone I knew might have been connected to them. I shared my concerns with friends and colleagues and was labeled paranoid.

Later, I tried to explain to the same people that I was on heavy medication at the time of the accusations. Some bridges were rebuilt, but not all. I think some people assumed that my description of fibroids, a physical ailment, was just a cover story for mental illness, but for me, my physical health and mental health were inherently linked. 

My doctor felt hysterectomy was my best option for relief but I was reluctant to give up the dream of having biological children.

In the fall of 2021, I received a laser hysteroscopy to remove fibroids from my uterus, but not my uterus entirely. It unfortunately wasn’t enough. 

In the year following, I was always tired and slept as many as 12 hours each day. I had a “never-ending period” that lasted approximately six months. Finally, I was scheduled for a full laparoscopic hysterectomy to remove my uterus but keep the ovaries intact. In the weeks leading up to the second surgery, my iron levels were so low that I had to come into a clinic once per week to get an iron transfusion. My doctor told me that when I had my uterus removed, it was enlarged to the equivalent of being five months pregnant. I was 45 years old.  

Finally, I was free from fibroids, but my journey with gynecological health didn’t end there. 

I always knew that hormones and my cycle played a role in my moods, but it wasn’t until a failed experiment with progesterone as HRT, six months after my surgery, that I had direct evidence that my response was atypical. Later, two different clinicians confirmed that at my age, I did not need progesterone as HRT and that my extreme reaction (brain fog, fatigue, heaviness in joints and limbs) was a clear indicator of PMDD. Starting, then abruptly stopping, this medication made the side effects much worse and left me temporarily immunocompromised. I experienced intense pain in my hands and feet and developed a COVID-like bacterial respiratory infection that lasted several months. I didn’t completely recover until August of this year. I was no stranger to mood swings and PMS, but with PMDD I found myself weeping and suicidal for no reason. I’d also have bouts of insomnia, another classic symptom of PMDD but it still took years to make the connection.

That is one of the challenges of living inside a medical system that separates physical from mental health. My overwhelming conclusion is that it is impossible to separate mental health from physical health. Many conditions that may be identified as mental health diagnoses turn out to have physical causes (Lyme Disease, brain tumors, stroke, Parkinson’s, and long COVID) or stem from adverse drug reactions.

Even though up to 70 percent of women will experience fibroids in their lifetimes, there is still considerable shame and silence around discussing menstruation or reproductive health disorders. And there is virtually no research exploring how the prolonged and heavy periods associated with fibroids impact the cluster of mental health symptoms referred to as PMDD / PME. Nor are there any longitudinal studies tracking the impact of hysterectomy on symptoms for women with a previous mental health diagnosis of any type – dismaying, given that the surgery is performed more than half a million times every year in the United States!

I wish I could get those seven years of my life back that I suffered from fibroids and undiagnosed PMDD, but I can’t. 

The next best thing I can do is share what I learned. Here is my shortlist:

Things I Wish I Had Known

# 1 - You can keep your ovaries after a hysterectomy.

# 2 - Anemia doesn’t just cause fatigue – it can cause hair loss, heart irregularities, bruising, scabbing, and even bone fractures.

# 3 - If you take iron supplements along with your morning coffee, the caffeine may interfere with iron absorption. You may also need to take Vitamin C with most over-the-counter iron supplements, or with vegetarian sources of iron such as chickpeas and tofu.

# 4 - The hormone-based medications used to treat fibroids can change your personality.

# 5 - And might even lead to PTSD.

# 6 - Same goes for IUDs.

# 7 - Worst of all for me – progesterone when prescribed as HRT.

# 8 - Having a hysterectomy will change your hormonal balance. My surgery was successful and the recovery was nearly pain-free. Six weeks later, I had panic attacks for the first time in my life. I didn’t know what they were. I woke up from a nightmare and felt like I couldn’t breathe.

Good Advice in General

- Give yourself plenty of time to recover after a hysterectomy. Go easy on yourself – not just physically, but mentally and emotionally. Avoid travel, major work commitments, and new stressors for at least the first two months.

- If you do pursue HRT, or try any new type of medication as treatment for fibroids or PMDD / PME, be sure that someone who knows you well can follow you or check in with you. Synthetic and bioidentical hormones can be life-saving and make a tremendous positive impact on patients, but they are not “one size fits all.” Similar to steroids or SSRI antidepressants, they can cause intense side effects – even psychosis – in some patients.

- Always be sure you have access to primary care in your local community. This is especially important when undertaking a temporary move (for a relationship, a job, a study opportunity, or caregiving) as women often do. Double-check before you sign a lease or give up your old living space!

As I struggle to put the pieces of my life back together, finding women with similar stories helps me feel less alone. Learning that hormones impact my mental health was incredibly empowering. I might not have a cure but at least I knew the cause. The unknown is the most frightening specter of all, both to ourselves and to our loved ones. 

I still don’t know what the long-term outlook is for me. I have been healthy and medication-free for three months. I drink soy milk (a natural source of estrogen) and take Vitamin D and fish oil, in addition to other supplements. I work out. Because I was completely incapacitated for several months following my surgery, it hasn’t been easy to find another full-time job. In the meantime, my priority is staying healthy and well.

I only wish we had more and better information to help chart a course. The “double whammy” of stigma around both menstruation and mental health is a contributing factor. There is absolutely no excuse for these attitudes, but they will not change overnight. Many people don’t even know what fibroids and PMDD are. They may not understand how serious they can become, or the limitations they place on our mobility and interactions in social settings. I was reluctant to share my problems on social media, not because I was shy or ashamed, but because I was single! Talking about an impending or recent hysterectomy felt like the least sexy topic in the world. 

Maybe in the spring, when the weather improves, I’ll do a pinup-style photo shoot to correct these misperceptions. Right now, I’m grateful that I have the strength, energy, and foresight to assemble a spinach and mushroom casserole for our holiday meal. 

Please understand that my story is only one of many possible outcomes. Our bodies and life paths are incredibly diverse. Trust your own experience and don’t be afraid to ask for help!

MEET BETH

I am a female founder, creator, and compulsive storyteller. Most of my career has focused on the intersection between technology, social change, and the arts. I recently returned from seven years in Portland, Oregon to my native New England.